TJ's Journey: Built on Love

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TJ's Journey: Built on Love

We created this space to share TJ’s health journey with our friends, family, and community — the highs, the challenges, the milestones, and the moments of joy.

This page is dedicated to our amazing son, TJ- a brave, funny, construction-loving little boy who is living with a rare genetic condition called DEGS1, a type of leukodystrophy. Welcome to TJ’s Journey: Built on Love 💛

This page is dedicated to our amazing son, TJ — a brave, funny, construction-loving little boy who is living with a rare genetic condition called leukodystrophy. It’s a place where we can keep everyone updated, raise awareness about leukodystrophy, and most importantly, celebrate the strength and spirit that TJ shows every single day. He may be small, but he’s mighty — and just like the diggers and bulldozers he loves, TJ is moving mountains with love, support, and courage. Thank you for being here. 💛
Your love and encouragement help us build a foundation of hope — one day, one smile, and one post at a time.

04/11/2026

It’s been a busy (and fun!) few days for TJ! 💙

At school, they’ve been learning all about spring and celebrating every moment- Bunny Food Day was a big hit, especially getting to wear his bunny PJs! 🐰 They also had an egg hunt, and TJ was able to fully participate- hooray for inclusion!

The excitement didn’t stop there… at the Leadership Showcase, the first grade sang and TJ danced his heart out! So proud of him and his whole class.

We also kicked off our first Miracle League game with the Yankees- TJ scored and had the best time with his buddies playing catch. ⚾️

So much joy, growth, and inclusion packed into just a few days! ✨

04/05/2026

Some days it feels like we are walking straight toward the storm.
TJ in his backhoe, Nora on her hoverboard, Tim beside them, and me a few steps behind, trying to hold onto the beauty of the moment while also seeing the clouds ahead.
That is what this season has felt like in so many ways.

But Easter reminds us that we do not walk toward the storm alone. Because of the cross, we have the promise that sorrow is not the end of the story. Friday came, and it was dark. But Sunday came too.

So even when this road feels uncertain and the storm seems closer with every step, we know Christ is already ahead of us. He goes before us, walks beside us, and holds what we cannot yet see.

And that changes everything 💛

03/30/2026

Behind the scenes of medical complexity often looks like constant maintenance, appointments, labs, scans, and decisions that most people never see.

TJ has had three local appointments in the last 7 days. While so much of this journey centers around the bigger picture, there are countless moving pieces that have to be carefully monitored along the way (as well as stops for delicious donuts! 🍩).

We are thankful that his eye scan looked good, and the majority of the levels being monitored alongside the drug trial are staying in a good range.

One area that is still causing concern is TJ’s lymphocyte count, which remains extremely low. Because of that, he is being referred to an immunologist to help problem solve and determine next steps.

We would be so grateful for your prayers- specifically for his lymphocyte number to improve, for wisdom and discernment for his care team as they make future decisions, and for us as his parents as we navigate what comes next.

Thank you for continuing to walk this road with us and for loving TJ so well. 🤍

03/29/2026

This bleeding heart is in full bloom again, and every time I see it, I’m taken back to the year my mom gave it to me for Mother’s Day- the same year TJ was diagnosed with Leukodystrophy.

At the time, I didn’t fully realize how much meaning this plant would come to hold. But now, it feels like the most perfect symbol: delicate, beautiful, and yes… a little bit broken. A reminder that beauty and pain can exist side by side.

Through that season, and every season since, I’ve learned what perseverance really looks like. It’s showing up on the hard days. It’s doing the work when your heart feels heavy. It’s choosing love, again and again, even when it hurts.

This plant blooms faithfully each year, no matter what it’s been through- and in its own quiet way, it reminds me of a mother’s love. Steady. Resilient. Unwavering.

Beauty and pain. Strength and softness. All growing together.

A beautiful bleeding heart ❤️

03/28/2026

TJ is back with the Yankees for another season of Miracle League baseball, and we couldn’t be more excited! We kicked things off with team pictures tonight, and the smiles say it all.

We’re ready for a season full of big hits, lots of laughs, and unforgettable moments on the field. Let’s play ball! 🙌⚾💙

03/20/2026

Sister Spotlight! Today was Nora’s third grade wax museum, and we couldn’t be more proud. 💛

She stood up there with bravery and confidence, speaking about something that means so much to her- disability awareness and inclusion. Nora chose to represent young author Isabel Plantinet, who wrote about her sister Carolina’s journey with leukodystrophy… a connection that is so close to our own family’s story.

What made today so special wasn’t just how well she presented, but the heart behind it. Nora shared not only Isabel’s story, but a piece of her own- helping others better understand her brother and the world he navigates every day.

We are always proud of Nora and the young lady she is becoming, but today felt extra meaningful. Watching her use her voice for something so important was truly something special. 💙

03/15/2026

In six magical days we visited five parks, ate Mickey ice cream, rode the monorail and the Skyliner, met dozens of characters, rode so many rides, and watched the nighttime parade light up Main Street ✨
Now we’re headed home to our own beds with tired feet, full hearts, and a lifetime of memories. We are so grateful for this unforgettable time together. 💙

03/13/2026

TJ continues to inspire everyone he meets! Including the magical characters of Disney! We’re so thankful for this opportunity to share these moments with him ✨

03/12/2026

Today’s magical moments at Epcot included a personal encounter feeding a manatee a head of lettuce, enjoying delicious food from different countries, and of course a Lightning McQueen and Mater sighting as part of the Flower Festival!!

03/11/2026

My shirt today read, Happiest Mama on Earth. And that summarizes our entire day ✨ 🏰

Address

Statesville, NC
28625

Website

https://www.gofundme.com/f/join-tjs-fight-against-rare-disease-at-chop?attribution_id=sl%3A4785e056-be36-4169-9d54-a29bb

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